NICE ME/CFS draft guideline - publication dates and delays 2020

Those delays will be a big strategic error that may end up in our favor, although I would frankly much rather avoid going through the obvious failure in the first place. COVID-19 is a reason to accelerate the timeline and expand the scope, not delay it. The fact that NICE does not understand the relation explains a lot about its failures, that the people involved as so-called experts don't even know the first thing about this disease. I'm only referring to those who aren't ME-aware, obviously.

In the coming months, more and more people will be subjected to the insult and injury of CBT and GET. They will be angry. They will speak out among themselves and express outrage. Eventually responsibility will track back to the fact that clinical practice is following NICE guidelines, which will apply to the COVID-19 cohort, and how it's inexplicable that an expert organization is so completely oblivious to the significance of their work as it relates to COVID.

This will expose the rank incompetence behind the establishment of the BPS model, especially how it was bullied into practice and how the ME patient community was always in the right. There will likely be some confusion as some people who would have had a natural recovery will say it's not so bad, even that it helped them, with probably some bickering but overall there will be recognition that exercise is clearly not safe and by this point too many will have experienced the medical gaslighting to not feel outrage at the CBT gaslighting, knowing why it happened in the first place.

Seriously this is basically like defunding the fire department during peak forest fire season. Not only should the timeline accelerate, it shows that the process needs to be much more visible, much larger, tying back to the fact that it will apply to the COVID cohort. Because that delayed timeline only means more people will be subjected to it, something that should and could have been avoided not only just recently but over a decade ago.

The extra delay itself will be subject to many complaints and lawsuits. A public health body that defiantly keeps harmful advice that was put into practice by a shady illegitimate process does not serve its purpose and should probably be disbanded and rebuilt from the ground up with a different model.

 

Latest email from NICE

 

From Twitter
https://twitter.com/user/status/1297942151494598658

 

Latest email from NICE

Dear Colleague,

RE: NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

The economic plan, review questions and search strategies for this NICE guideline have now been published on the project documents web page. This information is published for transparency, and to enable stakeholders to prepare for consultation on the draft guideline.

The consultation on the draft guideline and its supporting evidence is due to start on 10/11/2020. We will contact you again by email when the consultation starts.

If you have any further queries about this guideline, please contact CFS@nice.org.uk



Kind regards,

Katie Stafford

Senior Guideline Coordinator

 

Don't bother looking at the economic plan, there wasn't one.

The review questions were:

1. What is the clinical and cost effectiveness of pre-diagnosis management strategies for people with symptoms consistent with ME/CFS but are not clinically diagnosed?
2. In people with suspected ME/CFS, what are the criteria used to establish a diagnosis?
3. What are the predictive accuracies of specific tests, or clinical symptoms/signs, to identify people who will subsequently be given a definitive diagnosis of ME/CFS?
4. What are the barriers and facilitators to the diagnosis of ME/CFS?
5. What the barriers and facilitators to the care of people with ME/CFS?
6. What information, education and support do people with ME/CFS and their families and carers need?
7. What information, education and support do health and social care professionals who provide care for people with ME/CFS need?
8. What are the barriers and facilitators to providing information, education and support for health and social care professionals?
9. What is the clinical and cost effectiveness of pharmacological interventions for people with ME/CFS?
10. What is the clinical and cost effectiveness of non-pharmacological interventions for people with ME/CFS?
11. What are the experiences of people who have had interventions for ME/CFS?
12. In people with ME/CFS, what is the clinical and cost-effectiveness of different models of multidisciplinary care?
13. What is the most clinically and cost-effective method of monitoring and reviewing people with ME/CFS?

Search strategies is a more involved document so I won't be copying that here but it's probably only of interest to a few of us.. The review questions look to be the most important part of all of this.

 

does constant misinformation fed to trainee doctors, therapists, and the media by certain 'researchers'
come under this category?

 

I don't know how it would fit in, but I think, particularly with recent goings on with long-covid patients, that the whole issue of clarifying the difference between ME/CFS and 'chronic fatigue' needs to be raised.
If NICE are now saying they are not the same (something the ME community have been trying to get across ever since the adoption of CFS) then this needs to be made absolutely crystal clear in the guidelines. It should also follow that any research that relates to 'chronic fatigue' or any other variation of it (eg Crawleys CDF) should no longer be considered automatically relevent to ME/CFS.

 

Spotted in 9 September 2020 minutes from Forward-ME:

https://meassociation.org.uk/wp-content/uploads/Forward-ME-Minutes-Meeting-09-September-06.10.20.pdf

....suggests that ‘robust’ responses will be needed from all Stakeholders - @Andy and Committee
10 November onwards.


“6. NICE – ME GUIDELINE DEVELOPMENT

Charles Shepherd, Willy Weir and Tony Crouch were all members of the NICE Guideline Development Group and were limited in what they could say.

Charles stressed that this was going to be a completely new guideline. There had been many Zoom meetings during July and August and had made up the ground lost during lockdown.

A draft with conclusions and recommendations had been produced and consensually agreed. The draft would go out to Stakeholder consultation on 10 November and there would be a 6-week consultation period ending on 22 December.

If there was to be a Forward-ME response, Charles suggested the Group should meet towards the end of November. It was important that all stakeholders, as well as Forward-ME, should send in robust responses.“

 

Obviously it will depend on what the guideline says but the use of robust there suggest that it might not be what we are hoping for. It goes without saying that there will be the opportunity to discuss it on the forum, and, if there is a need, then I don't doubt that a response could be formed based on that discussion.

 

I wouldn't read too much into a single word here. Presumably Willie and Charles couldn't say anything specific, so Forward-ME are making a general comment rather than responding to specific information (which they don't have). I think the point is that any response needs to be robust whatever happens.

 

I also have a concern about anything Jo Daniels, Chris Burton, etc agreed to, and worry that they may have a particularly good idea about how any guidelines will be put into practice within the current culture of the NHS, and what changes to the guidelines might not require any substantial changes to what happens to patients.

 

Whether we agree with the draft guidelines or not a ‘robust’ response will be needed.

We will need to be outspoken about what we support as well as anything we disagree with, for example if the new guidelines, as we hope, are clear in rejecting GET as harmful and pointing out the lack of evidence supporting CBT there will be some stakeholders strongly objecting to such a move from the previous status quo, so we will need to be equally vocal in our support for such a change.

[corrected typos and added - it is important to remember that there are some stakeholders that believe in the BPS cult, support the MUS nightmare and emphatically want to retain the specialist services CBT/GET status quo.]

 

A robust response will be needed because the MUS nightmare is happening in the NHS regardless of what the revised guidelines will say (or don't say). Even if the revised guidelines help PWME avoid the MUS treatments, these are still going to be the way the NHS deals with for example, chronic pain sufferers, apparently increasingly so in the future. And of course, many PWME have these co-morbidities. I personally have to try to distract myself from thinking about this, as this whole scenario induces severe mental trauma in me.

 

This

 

Thank you all for your comments.

Think we are all a bit ‘edgy’ about the proposals coming out. Better rest beforehand, to be ready on 10 Nov to read and comment as @Peter Trewhitt suggests above!

 

Worth remembering all of this once the guidelines are revised.

 

I remember how optimistic I was when there was the move to set up specialist ME/CFS Services across England, and how disappointing that turned out to be.

 

Well it's not that I'm hoping for new and/or revised services, it's the principle that the money has been found to invest in long-Covid, so why can't it be found for ME. Obviously the devil is in the detail, but I'd like to see £10m invested into caring appropriately for pwME, and research of a 10k cohort.

 

I am not quite sure what you are implying @Andy. Surely this £10m is just going the way of all the other multidisciplinary drivel - employing people with no idea what they doing to turn a political handle. it is already established that people with 'Long Covid' have no demonstrable reason for going on being ill so it will be more of the same of doing some exercise and having some patronising chat. The research on the 10,000 will not be well targeted and will conclude that nothing much is wrong-because that is what has been concluded for ME. That would be my prediction.